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What is the New York State Rare Disease Collaborative?
What is the New York State Rare Disease Collaborative?
NYSRDC is a project of the Bleeding Disorders Advocacy Network for the New York State Bleeding Disorders Coalition. NYSBDC is a coalition of patient groups and treatment providers advocating for people with bleeding disorders in NYS. https://www.nysbd.org/ BDAN is a member of NYSBDC, and was created by people with bleeding disorders to foster education and advocacy by and for people with bleeding disorders. https://www.bdaninc.org/
In 1965 there was little treatment for people with bleeding disorders. Those with serious symptoms had an average life expectancy of 40 years and often suffered disabling complications. Thanks to decades of research and community advocacy that's changed. Today, people with bleeding disorders have a wide range of treatment options and the opportunity to lead long, active lives.
The experience taught us that while having a rare disease means your life will look different than other people's lives, your life doesn't have to be less than. We also learned along the way that other people with rare diseases face many of the same challenges we did, and sometimes still do.
We have what we do thanks to the hard work of others. Now it's our turn to give back. Our goal for NYSRDC is to share what we know, and work with the wider rare disease community to make life better for all of us.
The NYSRDC Contact Person
The NYSRDC Contact Person
Bob Graham of Varysburg, NY has the rare bleeding disorder Hemophilia A and has been active in the bleeding disorders community since 1991. Currently Bob is volunteer Public Policy Director for the New York State Bleeding Disorders Coalition (since 2009). From 2020 - 2024 he served as a member of the Steering Committee for Medicaid Matters New York statewide coalition. In 2021 Bob was honored by the Every Life Foundation as the State Advocacy Patient Advocate of the year. Recently Bob served on the NYS Rare Disease Work Group (2022 - '24), and is active in efforts to create a permanent New York State Rare Disease Advisory Council. Bob can often be seen in Albany, wandering the halls of government with his trusty sidekick.
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